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Testing 1, 2, 3

Gah! I am so frustrated! As many of you know, Evan has had some difficulties of the behavioral variety. And we have Children’s Hospital just right there. In other words, the best of the best for just about anything that can go wrong with a child. It all started with ADHD and medications from the family doctor over 3 years ago. Ritalin of varying dosages, Adderall, Straterra, Concerta, back to Adderall. Sometimes it works for just a bit before it stops working. Sometimes it doesn’t work at all. And I swear Straterra made it worse. But somethings amiss. This is not simple ADHD, and after fighting this for years, I told my doctor, who made a referral to Children’s. While I was pregnant and on bedrest. And they were booked. I settled for someone else with horrible results. So we tried Children’s. Again, no appointments, and this time they advised me to call every day to see if they had cancellations, but they were booked too far out to schedule something. Again, I gave up until I tried again. More referrals, even though my insurance doesn’t require it because I elected the most expensive, most comprehensive big-dog policy. No dice. And this shit has been going on for a couple of years. I try everything for Ev. And this year, when he started school, I was optimistic that he would have a better year with his new teacher.

Until she escorted Evan out to the car after school so she could talk to us. He’s being awful in class, according to her, and I am at a loss. Do I believe Evan, who has a track record of manipulating us? Or do I believe the teacher, who may or may not have some bias against Evan in such a small, intimate school? Whatever I should do, I know one thing: I cannot do this anymore. I cannot fight Evan and satisfy the school that while his behavior is atrocious, we really are trying anything and everything here at home. I cannot deal with the turmoil that arises from telling Evan it is time for homework/ dinner/ bed/ to come inside/ to take a shower. I can’t take the yelling and the blood-curdling, murder-movie screaming. The pounding on walls intentionally to piss off the neighbors during his rages. The lashing out at John and John losing his cool because it really is beyond human ability to tolerate this shit day in and day out for literally years of your life when you have no other outlet, when home is your job and there is no escape. At least I get to go to work. But even so, I cannot take the lack of decompression all of us humans need. I work, sometimes under extreme stress, and I come home to more stress from school. And to comound it all, there is no peace in my home, the one place I should be able to relax and unwind and take a deep breath…

We called the school. We hated to, but we have our backs against a wall with nowhere to go. We told them we were going to have to take Evan out of the private school and put him in public school. To which the principal told us not to and wanted to know what was going on. She knows us well. I told her that at least the public schools have special education for kids with problems, should Evan need that. And she sounded like she was about to cry when she told me Evan is way too gifted to do that to him, and that he will get lost in the shuffle or mixed up with the wrong kids. And she’s right, but what else can I do? So we devised a plan that breaks my heart. The next time Evan was to have one of his rages, we were to take him to the Children’s ER. Maybe then he would get seen, even if it meant he would have to be hospitalized first. How? How could I do that? How could I take my precious child to a psych ward? How? Someone please tell me. But then I got an idea, and I called Children’s 24-hours emergency intake line. And I unloaded it all to them: the breakdowns, the behavior, the manipulation. Everything. And they put me on hold while a guy got on the phone. And I told him. And the end result is that Evan has an appointment on September 6th. Yeah, just like that. Why couldn’t they do that 2 years ago? So what is the game plan?

My soon-to-be-10-year-old baby is going to be evaluated for Asperger’s Syndrome. Because I think he has it. Because his principal, though admitting she is not a mental health professional, say Asperger-like traits in Evan as well. What are they?

Well, all of this time, Evan has never been able to make friends his age. He flocks to adults or little kids, but never his peers. If he is invited somewhere, he is never invited back. This has always been the case, but we thought it was his high IQ.

He is too rigid. He seems to handle change on the surface, but if you look back later, you can see a sort of unraveling in Evan. When I graduated and started working the hours I do. When John stopped working and started staying home with him. When I got pregnant and put on bedrest. When Zach arrived.

He is afraid of everything. Last year, John’s mom came for a visit and they all went to an amusement park for a day. Evan had such a meltdown out of fear for a kiddie ride, that they had to shut the ride down to get him off of it. A kiddie ride. This summer, while he was visiting his grandma, they took him to this indoor play place for kids, and he was afraid of everything: the slide was too high. The rocks on the rock-climbing wall may come loose under his feet. The teeter-totter may cause him to lose balance. So while the kids around him played, Evan sat in the ball pit alone. Sorting the balls by color. Why is he afraid of everything?

I fight and fight with him to do homework, but he can sit for hours on the computer, researching the Titanic and the history behind it. Or the history of aviation. Occasionally he will play games on my Facebook page, but mostly he just reads on those two topics. He’s even prepared reports for his teachers just for fun. And he will talk about them incessantly.

He has no empathy. I would be in the hospital during my pregnancy, and he would know that the possibility of Zach being born too early to survive was great. And he still would throw tantrums for silly things. To take him out to eat, to a book fair, to the mall or an amusement park. John did most of these things with him, but he wouldn’t stop because I couldn’t go. He seems to have no empathy at all.

He reads at the level of a college student. He speaks like an adult. In fact, my mother-in-law said that during his visit, he used some words to which she didn’t even know the meaning and would look them up in a dictionary when Evan wasn’t looking. But regardless of all of this, he writes like a toddler. I cannot read it at all. They had to have an 8-pocket organizer for school, and the teacher had them label the pockets with things like “homework” or “For Parents”. Meaning we are to go through it each night and filter out the stuff that is meant to come home. I couldn’t read the labels at all. I had to ask Evan to tell me what they are, and since have memorized the squiggles that are supposed to be letters. And as the years pass, it seems to get worse. Not better at all. He does cursive just fine, but the schools have stopped that.

The rage. The endless screaming. I could deal with raising of voices. I could, I think. But I cannot take the screaming. And I cannot take the feeling of loving the child so much and hurting because he is obviously hurting, but yet not liking him at all. The gut-wrenching impulse to just run away from this is intolerable. But I resist. I resist because I love him so much and I know that somewhere in there is a reason for this.

Asperger’s Syndrome, though the cause and science behind it is unknown, is linked to prematurity (Evan). It is also linked to slowed language development in babies (Evan), clumsiness (Evan again), and more.

So we are going. To test my brilliant kid for a disorder that is a form of autism. I’m scared for him. But more than anything, I want a name to this suffering, to know that there is some reason for it, that this isn’t all my fault. I want help for my baby boy.

One thought on “Testing 1, 2, 3”

Ugh, my heart breaks. I’m sorry to hear you are going through such a difficult time right now. I am glad you were finally able to get an appointment. And I am so glad the school principal cares about Evan and wasn’t willing to let him go. Too often, kids like him slip through the cracks. He WILL do better in a smaller private school. And I will keep Evan in my thoughts. I hope you get a name for this as well. I know how having a reason for something can relieve so much stress. My fingers are crossed for you that you get some definitive answers.